Reply To: Anyone else affected by current IVIG supply issues?
In our area there are NO brands available. No one is getting their IVIG at our large health system in coastal southeastern Virginia. The last appointments where any IVIG products were available was the first week of March. I have been in touch with my neurologist as have the other patients and they say their hands are tied. I have written to CSL Bering who produces Privigen and have received no response. I have been a registered nurse for 35 years and can not believe this is happening. I made the initial post because i was surprised there was nothing being posted here and I questioned the facts we were being given. It is hard to spend 18 days a year (once every 3 weeks)in an infusion chair but when it gives you the ability to function it is all worth it and I have felt blessed that there was treatment. I always worried about the expense of the product and if my insurance would ever deny covering it but never that it would be no longer available. I appreciate your suggestions but we all seem to be at an impasse in our area. The hardest part is none of us had any warning or idea they there were issues until we received a call the day prior to our scheduled treatment that there was no product available and when it does become available (they have said the end of July at the earliest is a remote possibility) outpatients will be the last to be scheduled to receive it. The anxiety this has caused just exacerbates the symptoms caused by the MMN in the first place. Feeling frustrated.